While it has certainly been a minute since I've been able to come up for air long enough to write here, please know that your donations to The Cancer Couch have been put to the most effective work possible again this year. The foundation has been churning away working tirelessly on our mission to make MBC a chronic, not deadly, disease! Our Christmas gifts came early this year in that we were stunned and humbled to learn that research WE helped fund resulted in two published papers that came out in the same week! In cancer research time that is absolute lighting speed and these are prestigious publications! Merry Christmas to all of us!!! The publications are featured at the bottom of this page for anyone interested!!
In other news, I remain infinitely grateful to be here to celebrate my 3rd Christmas with cancer with my friends and family. As of this past summer, the last trial I had been on stopped working and my cancer spread quickly throughout my body and into my brain. I actually didn't know if I would even be here this holiday season at the rate it was progressing or if I'd be well enough to enjoy it. However, I am beyond thrilled to share that I am in my fifth month of an absolutely miraculous trial at MSKCC that is still working! It is a drug called Larotrectinib and it works on the NTRK fusion mutation which we found I had through genomic sequencing testing. Less than 1% of cancer tumors have this mutation and it is seen even less frequently in breast cancer, so to say I hit the genetic lottery is an understatement. Not only is this targeted medicine effective - I also have virtually no side effects. This is the hope and future of cancer, but this drug only helps a limited number of people. To find this kind of treatment for others requires much more funding and investigation. That is why we fund research to keep finding meds like this for the next 1%, 5-10% and 20-30%. Little by little we will chip away at these mutations and resistances until we overpower the cancer with precision medicine and immunotherapy for all.
Our donations are outlined on our financial page under the heading "Foundation" but to shorthand it: We were able to give $300,000 to research which was matched to $600,000 in 2018 and we donated $5600 to Angel Funds for MBC patients in financial need. That brings the total impact of this foundation over not even 3 years to ...(drum roll please) 2.3 million put into MBC research and $23,000 to Angel Funds! WOW!
A huge thank you to all of you who help through any kind of support or donations. The support is breathtaking and has already moved the needle with these two major publications coming out in this short time frame that will launch even more extensive studies. Thank you to all who participated in another hugely successful and insanely fun Cancer Beat, the multiple scoops challenges, the Beth Calabotta Swim challenge, many other smaller fundraisers that took place throughout the country and fellow MBC patient Susan Melia put together an amazing "Living Beyond Pink" event in November that brought in over 20k! The Cheshire and Fairfield Mombies (started by Terry Davis) are still dancing their way to research funds. The Bake It Happen campaign, led by sisters Shari Brooks and Stacy Pagan, brought in over $53,000 after the match! Thank you thank you thank you. You are saving countless future lives and families from the devastation of this disease! Someone somewhere funded the first idea of the research and trial that is now saving my life and I know we are doing the same for so many someone elses down the road - maybe even one of you or someone you love!
Congratulations to our incredibly bright and hard-working researchers, their teams, and every one of you who helped fund this groundbreaking work! I was going to make a very lame attempt (with the help of my brilliant research advisors) to update our donors on the research progress you have all funded - and then they went and got published and took that chore off my plate!!! A million thousand thank yous and may your holidays and upcoming year be filled with gratitude, joy, love, happiness and health.
Dr. Nikhil Wagle from Dana-Farber was published in Nature Genetics:
Dr. Sarat Chandarlapaty was published in Cancer Cell:
Have a wonderful Christmas for those who celebrate and the happiest 2019!!!
Yes, it's that time of year. Breast cancer awareness month is upon us and as someone who will ALWAYS have breast cancer and who is completely dependent on new research and treatment to stay alive - I implore you to choose wisely and thoughtfully when supporting a breast cancer cause this month. If you are looking for a perfect way to support the cause, I can offer you the cliff notes version here of a campaign that is easy, fun and effective as ALL of the proceeds go directly to The Cancer Couch Foundation. The Bake It Happen campaign was started by my pal Shari Brooks and her sister Stacy Pagan to honor their mom Judy - an avid baker who died from MBC. All you have to do is log in to their Bake It Happen website to get the featured recipes, then BAKE, SHARE and THAT'S IT! Money will be donated for each share on social media with #bakeithappen. Not social media savvy? That's ok! You can email or snail mail a picture of your recipe! Not a Betty Crocker wannabe? That's ok too! Skip the cupcakes and just donate!!!!
Here is the story of why and how the Bake It Happen Campaign got started:
There is no cure for Stage 4 Breast Cancer. More than 41,000 people die each year from Metastatic Breast Cancer (MBC) in the US alone-- our mother Judy Levin was one such casualty. Very little of the funding for breast cancer research goes to Metastatic Breast Cancer. So, we were determined to design a creative fundraising campaign to raise money. Judy was a beloved baker/cook even throughout her 6-year battle with MBC. Her kitchen was a communal table for family, friends and even strangers to embrace the tastes and love emanating from her dishes. After receiving multiple requests for Judy’s recipes over the decades, her daughters, Shari and Stacy, realized they could spread Judy’s culinary love -- all in the name of Metastatic Breast Cancer research. And so, in 2012, the Bake it Happen campaign was born.
After 5 years of Bake it Happen, we achieved our first goal: to build the baking campaign into a national fundraising movement. Over time, thousands of supporters across the country began to pass on Judy’s culinary legacy and hope for a cure. To date, we have raised over $60,000 for breast cancer research and are determined to raise more! GET BAKING.
Dear Cancer Couch friends and supporters,
Things in Cancer Couch world have changed quite a bit since I last wrote. While I am not able to publicize the exact details of my health situation right now (out of respect for my family's privacy and the information flow to my kids), I will say that this summer my cancer has progressed and the trial, that I was very lucky to have been on, stopped working after 9 months. This is the 'kick the can' game that many stage 4 cancer patients are forced to play. There is no treatment for the kind of cancer I have so I am at the mercy of experimental trials to come out and hope that I am still here, and a genetic match for them, when they do. Believe me, I drink green juice everyday, do acupuncture, energy work, yoga, have tried cannabis oil, herbs, you name it, and these things help maintain my overall health and sometimes even completely work for many people. But, my cancer is extemely aggressive and it seems for me and so many others, RESEARCH IS EVERYTHING. Funding any kind of metastatic cancer research informs cancer across all body parts. The trial that I miraculously qualified for and began two weeks ago, treats all kinds of cancers. I am the ONLY breast cancer patient on it currently. Being at the helm of The Cancer Couch I can tell you - we have no time to waste. We fund the brightest researchers and every dollar you give is MATCHED and goes straight to their labs!
We have our BIG annual fundraiser, The Cancer Beat, coming up this Saturday 9/8 at The Warehouse in Fairfield, CT featuring G.Love & Special Sauce and comedian Christine O'Leary. The best bang for your buck is the $250 VIP ticket. It is not only a partial donation and tax write off for a great cause but you get dinner, premium open bar ALL NIGHT, comedy, a concert and the fantastic program with the researchers speaking and amazing chances to win once in a lifetime prizes like green room tickets to Jimmy Kimmel - it is a great deal!!!
I hope to see you all there! Get your TICKETS HERE - They are not sold at the door!
There are so many good things in the month of August...I'm on my own version of Eat, Pray, Love on a healing retreat in Brazil (pics at bottom!), which is pretty spectacular. It's also the month of my cosmic twin birthday with my daughter Bella, and The 3rd Annual Cancer Beat tickets are on sale!!! Click here for tickets!!!! You can also place an ad or sponsor the event through that link as well!! The event will sell out so don't delay and I can not tell you how important research is. Studies are literally becoming available to me now that were not around even a year ago - we must keep this momentum going! Thank you all for the ongoing support!
This is a quick update as I am really just focused on healing and The Cancer Beat right now - so go buy those tickets! Christine O'Leary and I will make you laugh, then G.Love & Special Sauce will throw a great concert! In between we will hear from our researchers about what we have all funded, honor the amazing life of Beth Caldwell and have a really cool chance drawing with VIP green room tickets to Jimmy Kimmel live and a trip to LA and Italy!!!!
What's Good? RAISING MONEY FOR MBC RESEARCH WHILE HAVING FUN! This newsletter is all about our two signature fundraising events - The Scoops Challenge and The Cancer Beat! The Cancer Beat Tickets are LIVE today here! AND... the $250 VIP tix and $100 General Admission tix are on sale for early birds ($225 and $80) through July 15th!! THIS WILL SELL OUT AGAIN THIS YEAR SO DO NOT DELAY! My pal, comedian Christine O'Leary, and I will co-host and supply lots of laughs as we kick off the VIP program and honor the incredibly powerful life of the one in a trillion Beth Caldwell, mom, wife, civil rights attorney, and badass MBC advocate - who died from MBC this past year. She is the reason The Cancer Couch exists. She was the first person I met (through our pal Kim Forde of Fordeville Diaries) when I was first diagnosed. In one phone call - she lit a fire in me to change the landscape, narrative, and funding for breast cancer that still burns to this day. The night will continue with a concert by the uber cool and funky G.Love & Special Sauce and end with one lucky chance drawing winner scoring a 5 star trip to Italy! No pressure, but last year's winner of the Paris trip did take moi :) Just sayin'. Additional chance drawing opportunities, keeping with the theme of the night Live, Laugh and G.Love, will come available in August on the event webpage. Teaser - A trip to LA (flights donated by Jetblue! and 2 Green Room passes to Jimmy Kimmel LIVE!) Please consider placing an ad for this event or being a corporate or individual sponsor or underwriter! Check out the Facebook Page with sizzle reel from last year, sponsor shout outs, and more info!
There are so many people I need and want to thank that I actually can not even keep track. I truly cannot. The number of people that have stepped up to help with so many things is astounding and I know I will not be able to properly thank you all but let me try to begin with the people who made the Six Ice Scream Scoops Challenges happen! These were held on or near the last day of school this year as an incredibly fun and successful way for kids and communities to get involved and support this cause. In total, with the match that comes with all of our donations, over $141,000 was raised for MBC research! Thank you to the wonderful ice cream shops who hosted these challenges, Saugatuck Sweets, Sweets Claudes, Valhalla Village Creamery & Sweet Shop, Weir's Ice Cream, and The Ford Motor Company - Warriors in Pink Program - our marketing sponsor, and Belfor who sponsored our two NY events! In addition to me getting to practice my stand up routine while em-ceeing the Fairfield and Cheshire events, I had so much fun watching these kids smile, laugh, and let loose for 3 minutes to chow down on ice cream and kick off summer for a good cause! Contact us to host a stand in your town or school next year! We are able to accommodate any allergy and kids can even bring their own treats - fruit based, dairy-free, whatever you like. It's the cause that counts and teaching kids that philanthropy can be fun. Check out this sizzle reel (from our friend Tim Kerr at Albatross Production) to see a Scoops Challenge in action, with our fab DJ Peter G, and just a few of the incredible photos at the bottom of page captured from the events - most by our incredible photographer Lisa Garcia
A GIGANTIC THANK YOU TO the amazing people who made these events happen: Susan Beaudwin, my sisters Vivian Ciampi & Paula Cunningham, Lisa Laudico, Amanda Fredricks Nokes & Jennifer DeLillo from Belfor, Vicki Swanson, and Danielle Richlin!
Thank you so very much to my beloved buddies who worked the Fairfield SS Volunteers: Sarah Bierman, Jennifer Royal, Stephanie Gervasi, Tricia Eastman, Alexa Hiza, Nicole Chiravuri, Nicole & Ella Bross, Maura Brum, Kyla Ricci, Claudia Mounsey Lau, Christina Como, and Suzanne O'Neill!
...the amazing first time! Staples and Westport SS Volunteers: Ella Jarvis, Emma Yorkes, Tatiana Bicalho, Sarah McGroaty, Nicole Shapiro, Bridget French, Erin Lynch, Bryn Reilly, Merrimack McCallum, Madison Tamm, Rohan Goswami, Walker and Adam Green, Alex and Anthony Laudico, Karen Amaru, Ginny McGovern, Anne Craig, Charlie Overton, Caroline Barney, Jayne Chu, Max, Morgan, Margot Richlin, Mark & Gina Dilorio, Charli D'Amelio, Julia Leitner, and Kim Riccitelli!!
... and the TROOP of Cheshire Volunteers: Pam & Haley Bingman, Bella, Carina, Colby, DJ, Ellen, Katherine & Zachary Ciampi, Betsy DePaulo, Jen Dominello, Patty Flynn-Harris, Susan Jaramillo, Mary Kilpatrick, Laura Palma, Maricele Riemann, Nicole & Serena Staples, Flavia Cass, Tanny, Carly Larosa, Kristin Kurtz, Brenda & Ryan Downey, Sophie, Sabrina, Jean Kelly, Nev, Allison O'Leary, Janelle Margolis, Kelly, Brooke & Nev Stanziale, Kathy Gentilozzi, Laurie Danaher & Catherine Takizawa!
The NY volunteers from Belfor Restoration led by Amanda Fredricks Nokes and Jennifer DeLillo: Stephan DeLillo, Donna Meyer, David Rizzo, George DeJesus, Peter Sagui, Geoff Miller, Melissa Olsen, and Debra Pearlman!
THANK YOU ALL SO MUCH - now go get those cancer beat tickets!!!!
This is it folks...summer seems to be FINALLY making a showing in the Northeast of the USA anyway! We went from snow to rain, to 30 seconds of sunshine and back to rain. BUT - we are finally getting some heat and it is time to celebrate summer with fun and raise money for life saving cancer research! There are six scoops challenges going on this year throughout NY and CT! You can donate to any team online by going to our homepage and clicking on scoops challenges or the links below! Thank you to all our scoops coordinators (Amanda, Danielle, Lisa, Paula, Vicki, and Viv!) and dozens of volunteers and ice cream stores (Sweet Claudes Cheshire, CT; Saugatuck Sweets in Fairfield and Staples and Westport BELFOR- VALHALLA VILLAGE CREAMERY & SWEET SHOP and SALISBURY MILLS SPONSORED BY BELFOR AND WEIR'S ICE CREAM). Please find one near you to get a team going or stop by and check out the pure good will, hilarity and just utter cuteness of moments like these...Thank you all for making such a difference for this life-saving cause!!! See you at the SCOOPS!!!
We are so excited to have not one, not two, but SIX Scoops Challenges happening during this end of the school year season! Click here to sign up for one near you or support a team! A huge thank you to my sisters Paula and Vivian and our friend Vicki for taking on the task of organizing all of these and to all our amazing hosts and volunteers... we will be sharing more about them and these great events soon!
The Scoops Challenges are not only a fun way for kids to get involved and feel empowered to do something to help support their mom or dad or loved one with breast cancer. The Cancer Couch also starts an Angel Fund in honor of someone in every community at the Breast Cancer Center where they receive or received treatment to support metastatic breast cancer patients in financial need in their area.
The Angel Funds have been one of the most rewarding aspects of this foundation. Last week I received our annual report from the Beth Calabotta Fund at the Blessing Center in Illinois stating that they were able to pay a $900 electric bill for a woman with MBC, whose lights were about to be turned off. That money was generated from the Swim Challenges done in Beth's honor and it makes me so happy to know that so much goodness is still being done in her name.
Thank you all for your continued support! Come out and support a Scoops Challenge near you and stay tuned for more information on The Cancer Beat coming soon...tickets will be on sale July 1st! Save the date...9/8/18!!!!
It is November 12, 2017. The Cancer Beat was October 21, 2017.
I am almost recovered.
Before I get into the details of what goes into making The Cancer Beat such a magical night…let’s get to the money talk. With approximately a quarter of a million dollars that comes in from this event alone, combined with the generous donations you all make throughout the year, and the proceeds from our incredible Scoops Challenges, Swim Challenges, and Bake it Happen Campaign (and now for next year – the MOMBIES viral video!) we, along with our MBC Collective partners Hope Scarves and Twisted Pink, were able to put 1.2 million dollars into these two cutting edge labs at Dana-Farber and Memorial Sloan Kettering this year for metastatic breast cancer research!
Yup that’s right – 1.2 million dollars! We did that. All of us. Thank you so much for helping us achieve this! This magical, fun, amazing, and successful event takes a full year to plan – and almost as long to bounce back from :). We have already started planning for next year – worth every minute. My brilliant, artistic friend Casey Caine once again transformed the The Warehouse at FTC …
into this …
That sparks the magic…the incredibly cool decor that Casey creates to re-invent the space each year. Next, we have our amazing volunteers (Stef, Robin, Shelley, Jackie, Caryn and Kim) who spent months planning and cajoling other amazing event volunteers (Karen, Mary Ellen, Nancy, Sarah, Gabby, Cecily, Claudia, Lori, Sue, Paige, and I know there were others I am missing!), getting ad space and sponsors, helping with guest lists and a million other details. Viv and Pam thank you both for working so tirelessly on the program. A big thanks to Tracy Locke (Mike and Danielle!) who graciously donated their printing services, allowing us to bring in $21000 in program ads! And a shout out and thank you to Nicole B and Steph G who tackled the three page Rider for the band – teacups and all! Here are some more pre-event shots of the team getting everything ready…
Thank you to WEBE 108, Mofly Media and WTNH Channel 8 for being our media sponsors this year and to all of our generous sponsors, including our year round marketing sponsor Vegalash!
Talk about planning. Carol Lentini, of Along Came Carol – who, despite having just lost her husband and partner in everything – the lovely Marc, rallied and served her delicious food for this event. She blew us away with both presentation and taste. And, knowing that she has been a chef to the stars (Michael Jackson and Bruce Springsteen to name a few) her special dinner party for 12 at home – went for $22,000 as we had not one – but two – of these auctioned off! Thank you Carol! Scott, Robin, Anne, Tom, Suzanne and Dave. Don’t forget you all said you’re inviting me for dinner!
By the way, do you know that my beautiful, kind, talented friend Lisa Garcia of Photography by Lisa Garcia, and her generous team – volunteer all their time and talents to take these photos for us? We love you Lisa and team! (Lisa, I’m only 5’4″ and I look like Andre the Giant in heels next to you!)
Speaking of volunteers…
And then there is the incomparable Howard Jones, featured here doing meet and greets back stage with one of our local sponsors, Josh from Vinyl Cafe, and me and my awesome college friends. He is the loveliest, most understated rock star. I was teasing him before the show asking for a “fun fact” about himself that his fans might get a kick out of. He is so humble that it took about three hours before he finally came up with the “fun fact” that he likes 10 pin bowling. To which I replied, “Um…ok rock star, I’m not sure how fun that is, but it is definitely a fact. Can we do any better than that? C’mon you’re a rock legend.” To which he said, “Well, there was this one time when Mick Jagger was in my dressing room and…” I cut him off right there and said “Ok, simmer down big shot – now you’re just bragging.” He is so endearing and kind, and his music and voice are as relevant and strong as ever.
The real magic of the night however, was getting to honor our beloved Beth Calabotta and Holley Kitchen with post-humous advocacy awards that were accepted by their families. Thank you all for being with us Dave, Mary, Teri and Missy. Thank you to my “other daughter” Grace Pelle (aka the next Taylor Swift!) for singing “The Fight Song” to kick off the night to Holley Kitchen’s video, and to all the breast cancer survivors and thrivers who joined me on stage.
Thank you to our incredible friends and family from Cheshire, CT – who came in style in their rockin’ party bus…hosted by my sis and bro-in-law Viv & Marc Ciampi! Thank you Cheshire, I love you guys!
I made out particularly well in the Live Auction this year as not only am I getting to attend both of Carol’s fabulous 12 person dinner parties, but my generous friend Kyla Ricci was the winner of the chance drawing for a 5 star weekend in Paris sponsored by Cruise and World Travel …and she is taking me! It was like a reverse Oprah moment when her name was announced by last year’s winners Gregg and Melissa and I was so excited to be able to give this trip to my sweet friend and her husband, but then she flipped it around on me and announced I would be her plus one! It must have been all that “dirty weekend” talk that made me an obvious choice :)! And then, 4 other girlfriends of ours decided to join us. So, look out Paris…there will be six of us headed your way for an epic ladies weekend in February!
We also have a special shout out to our “Whole Beat Table” donors: Tom Quinlan, Rob & Cindy Citrone, and Peter & Susan Armstrong – Thank you for your generosity!
My husband Tom was a great sport about sharing his birthday with all of us and matching the generous $25,000 paddle raise you all brought in for his bday gifts! For some strange reason there is nothing more he wants than to have me around for more of these so thank you all for your generous bids, and to Tom for trying to keep me around to nag him on more birthdays :)…
And last, but most certainly not least…
Thank you to the men, the myths, the legends…our heroes, Dr. Sarat Chandarlapaty and Dr. Nikhil Wagle and all of our friends from Dana-Farber Cancer Institute (Erin) and Memorial Sloan Kettering Cancer Center (Janie, April, Heidi) who came to the event and who support us all the time in all we do! We let them out for a few hours to party with us and talk about the amazing work they have done with our funds from last year. Then we told them to get right back to the lab and go cure cancer!
As many of you know, this past September I received the very difficult news that my cancer has metastasized. I was among the 30% of those with early stage breast cancer who metastasized to Stage 4. The foundation that I started, to help others, will hopefully help to save my own life as well. I have not published this information until now because we just told our kids this news last night. More than ever, I so appreciate the self-starter campaigns like Bake It Happen, The Mombies, and the Scoops and Swim challenges that people are running for The Cancer Couch! Let’s keep the momentum going, share this website with your friends, sign us up for an employee match or united way donation, have a jeans day or dress down day at school, host your own Scoops or Swim challenge (we have all the instructions and gear), or something else that works for you, or just donate! So many lives, including my own, depend on us making real advancements in mbc! Together we can move the needle – look at what we’ve done in just our second year! Thank you all so much for your support!
thousands of us, in the mbc community, and beyond – are heartbroken as we prepare to say our goodbyes to our beloved friend, Beth Caldwell. she is so loved by her readers Cult of Perfect Motherhood. her friends in MET.UP and Metavivor. every breast cancer patient, researcher, advocate, politician, and journalist across the globe, who’s life she ever touched. and for us – her huge mbc community. she is our compass, our friend, our biggest cheerleader.
okay beth, if J is reading this to you – i have to know that maybe there is a chance that i can still make you smile. maybe j will tell me, if you can still hear this, AND appreciate my humor. the later being the taller order. J -if u can please tell beth that, in addition to loving her – i want to tell her two things that i hope will give her a smile. 1. beth, please know that you needn’t ponder if your t-shirts are the coolest ever, or not…they are. the coolest. ever. always. amazingly so beth, really. do you have a t-shirt guy that silk screens out your every thought? its impressive. i also want you to know, that your relationship with #bestdocever (which is what Beth calls her awesome oncologist), is fantastic, but always makes me feel like i should be closer to MY oncologist, like go see a game together kind of way. but then i think, no. we’re cool. only Beth can be the #bestpatientever.
my community did this for The Cancer Couch, and sharing this is my honor to my friend and champion, Beth Caldwell. by viewing, donating, and sharing the incredible video below, you can raise money and awareness for metastatic breast cancer (MBC). MBC advocacy, after a career as a civil rights attorney, has become her life’s work.
instead of “tricks or treats” this year, these ladies turned something, that started out as creative and fun, into something amazing and